Hello dear family and friends. Stephanie and I have created this blog to provide you with updates on our little buddy Levi's fight with leukemia. Your outpouring of love, support, and prayers has been both overwhelming and humbling. We have a long road ahead of us, but we know, with God's help, that Levi can win this battle. He is a tough little guy fighting a tough disease, but our God is tougher. Please feel free to read our posts and comment as you feel led.

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Tuesday, July 5, 2011

Round 2.... Fight!!

Hi everyone,

We made it down to Riley this morning around 9:30. Thanks to Amy for dropping Caylee off at Steph's mom and dad's house, which made our morning much smoother. We were able to meet with the doctor right away, who wanted to talk to us before we did any tests or gave Levi IV fluid. That kind of tipped us off...

The doctor confirmed that the diagnosis is AML Leukemia. Apparently the tests that had come back negative before were negative because the leukemia is appearing in the bone, not the bone marrow (we asked if this was good or bad, and the doctor told us it doesn't really make a difference - just makes it harder to diagnose). Since it wasn't in the bone marrow, the white blood cell counts and the bone marrow tests were coming back clean.

This of course wasn't the news we were looking for. But, honestly, we are relieved to finally have an answer, give this thing a name, and start fighting it. Steph and I are at peace this afternoon, because we finally know what's wrong with our little guy and we know that God will get us through it. We just want to get our little guy feeling better; he has lost so much weight, and has absolutely no energy, appetite, or desire to play. For those that know Levi, this is very unlike him.

So here is the plan as of this afternoon. Levi was admitted around lunch time, they gave him some morphine (which we were thankful for - he was in a lot of pain), and have done a few additional blood tests, an echocardiogram, and a kidney function test to get baseline data before they start treatment. Later this evening he will get an EKG, a blood transfusion and also TPN, which is a nutrient-rich IV supplement that will help with his nourishment. Then, tomorrow morning they will take him to surgery to put in a central line, take another bone marrow biopsy, and a spinal tap. Tomorrow night they will start chemo treatments. At some point (probably tomorrow) they will draw blood from from me, Steph, adn Caylee to see if any of us would be a match for future bone marrow transplant.

There will be multiple rounds of chemo to combat this disease. The first round will be ten days long, but he will need to stay in the hospital for approximately 30 days because his immune system will be suppressed. The entire course of treatment will probably last 6 - 8 months. This all sounds bad, but here's the good part... Levi should start feeling better within 3 or 4 days from ths start of his chemo. We can't wait to get our little guy back. Additionally, the success rate of this chemo treatment is very high, and the outlook is positive. What's more, Levi won't remember any of this when he gets older (although I am pretty sure it will be indelibly inked on mommy and daddy's memory). Finally, we are in a really good hospital and are being showered with attention and support from the nursing and child life staff. We have a great deal of confidence in our doctors, and know that Levi will receive highest level of treatment here.

We have alot of details, logistics, and planning to figure out in the next couple of days. As of right now, I think I will be heading back home with Caylee so that I can go back to work. Steph will then stay down here at the hospital with Levi. There will be lots of driving and late nights, but we'll figure it out. If any of you have experienced things like this and have any bits of wisdom or advice to share, we're all ears...

I know this news will hit many of you pretty hard. But be encouraged, because God has a plan for our little boy, and He alone holds Levi's body, health, and future in His hands. Please continue to pray for Levi, but do so with thanksgiving that we finally have an answer and that we can continue to share his story and God's love to those we will be in contact with here at the hospital. I have already had the opportunity to share his story with someone here today and encourage a sister in Christ. Please pray that God will be glorified through this trial in which we find ourselves. Please also pray that our little family will be able to withstand the difficulty of travel and time apart.

We will be updating this blog frequently. We thank you from the bottom of our hearts, and love you all. Remember, our God moves mountains.

8 comments:

Michael&Family,We are so thankful that you finally have a diagnosis for Levi so now you can move forward with treatments for HEALING! That too which God has provided!! Thank You God! We send YOU Positive Prayers and Energy! love Brenda&Gene xoxo

Hello my name is Andrea(plank) Younts I went to high school with Stephanie. I just wanted to let you know that my thoughts and prays are you with. I don't know what it is like to have a child go through something like this, but I can relate alittle. Last summer my husband had a brain bleed, and I spent most of the summer at methodist. I did learn a few things like if you get on the people mover and ride it to methodist they have a pretty good pizza place in the basement. The people mover is also a good thing to get you out of the hospital and I'm sure Caylee would like it. My kids always did. If you ever want to facebook me about other tricks I picked up feel free to.God will watch over you and will get you through this. Sending prays to you and your family.

Michael and Stephanie, Thinking of you all and want you to know if there is anything we can help with on this end please do not hesitate to ask. We would be happy to take Caylee if you like. She is welcome to be here day and night and to play with the other kids. My little dude is tough and he will fight this and win.

My name is Rachel Blish, I know you don't know me, but I am friends with Amy and Nate. I was chatting with Amy last night and I would really like to send some food up to you w/ Amy. Do you have a microwave? Would you like anything specific? I know I can't help Levi, I wish I could, but I was hoping I could at least help you feel a little better with some good food in your belly.

Please let me know if you have any requests.Levi is in my prayers everyday!

I was led to your page via a post on FB by Janice Engle. I will be praying hard for all of you as God leads you through this journey. If you don't mind, I'd like to add you to my blog roll. God bless you for being strong, God-loving parents. You have been blessed with beautiful children.

Michael and Stephanie, you don't know me either but I'm a friend of Christine's. I have been following Levi's illness and so glad you finally have an answer. I will keep you in my thoughts and prayers and hold Levi close to my heart.... Susan